Thursday, August 26, 2010

The "System" is Killing My Son!

The mental health system, formally referred to as the medical model, (now called the RECOVERY model) and the laws, which keep his civil liberties intact, are allowing my son, (who I will call Joe) to die a slow death!

Joe's right to say no to treatment for an illness he does not realize he has, is slowly destroying what "brain function" he has left. The revolving door of uncertainties has stripped Joe of his dignity one horrific and painful experience at a time. Yet, Joe doesn’t remember these consequences and continues making the same bad choices again and again. He doesn't have a rear view mirror. 

In order to keep our own health intact, we are forced to help Joe from a distance. Would I be forced to abandon support with my son if he were dying of cancer? If I abandoned a loved one with a serious physical challenge, I would be arrested. But in our case, we are counseled to set healthy boundaries and turn our back on a family member when they are at their worse! THIS IS WRONG!

Joe was diagnosed with a serious brain disorder when he was a small child. During these years, he had many supports in place under the medical model. His Father and I traveled to other cities, even out of state to see the best specialist we could locate. We searched everywhere for solutions, since Joe had trouble sleeping, regulating his moods, extreme hyperactivity and horrendous rage attacks that seemed more like seizures than a temper tantrum. We researched every alternative treatment and therapy available to find solutions to help our son settle down enough to stay 'in a classroom' much less "sit in a desk."

In Joe's early years, he was always moving ... he never stopped bouncing, jumping, running, skipping, rocking, etc. Joe appeared to be the energizer bunny. 

Slowly over the years, doctors did discover a combination of medications that helped. By the time Joe was 16, he was working on obtaining his pilot’s license and had earned special certifications that would “in our minds” no doubt help jump start his career. Joe was a gifted, a talented young man with great charm and good looks. 

 Now, all of that potential is being swept up in a psychotic hurricane! Just 4 years out of high school, Joe is defeated. His way of coping is to NOT take the medications that stop his mania and delusions. He is trying his best to be a productive citizen, working on goals that will give him stability; but his brain disease keeps getting in the way. Yet, there is no way to make Joe understand what is happening.

Joe's psychotic break coincided around the same time that I was diagnosed with debilitating autoimmune diseases. Finally desperate and exhausted, my husband and I were encouraged by our son’s doctor to file a "beyond control petition" in the court system. We were hoping to save Joe from his own dangerous behavior. Yet, instead of going to a hospital or treatment facility, he was ordered to jail, punished for behaviors that were direct symptoms of his untreated brain disease! During these hearings, we became traumatized of the inhumanity of the adult system! We watched in terror as our gifted young son was usurer into the court room in an orange jump suit, shackled and cuffed like a prisoner. THIS IS WRONG!

WHY WOULD A DOCTOR ADVISE PARENTS TO DO THIS? Because the behavioral health system fails to recognize individuals who lack capacity to have informed consent. It is designed to punish behaviors ... not treat them! 

Prior to Joe's 18th birthday, professionals encouraged us to forgive our son’s inappropriate behaviors, to embrace each day as new, because he was unable to learn from his consequences ... yet as an adult, we were told his only option was jail and that should force him to hit bottom. Would doctors recommend this if he had cancer?

After Joe become an adult, his illness escalated rapidly. During one extreme manic episode, Joe once traveled to another state to open a business that only existed in his mind. He acquire speeding tickets, wreck cars and lost his driver's licence. He opened up credit card accounts he couldn't pay, destroying his credit. He move into apartments he couldn't afford and was evicted to the streets. We allowed him to move back home, only to be forced to ask him to leave again, due to his refusal to accept treatment and his threats against us.

Another time, while I attempted to help Joe be admitted to a psychiatric hospital ‘voluntarily’ … he ran barefoot into the freezing night, fearing the FBI would track his steps. All my son wants then and now is to be a productive businessman … but his untreated brain disease and the horrific consequences get in the way.

Finally one evening, in an angry manic rage, Joe cornered my husband and I into our bedroom demanding we sign a $10,000 business loan. (In his mind, Joe believed he had created a computer operating system that would revolutionize the world.) During Joe's verbal attack, I called the local crises line. The trained operators were unable to reason with Joe, because he was too sick! So instead of dispatching an ambulance, they called the police!

Across the US, everyday, law enforcement officers are placed on the front lines as psychiatric medical providers! Police are not licensed to provide medical services. The police are NOT paid enough nor have the resources to help families like ours in crisis! Too often, these situations end up deadly and young individuals like my son who need medical care, end up tazed, shot or killed!

These officers said, “your son is delusional and needs to be hospitalized.” But since Joe has not actually threaten your life, he will not be admitted! They encouraged us to press criminal charges against Joe, hoping he would eventually gain treatment through the back door of the justice system. (Joe was recently released from the state psychiatric hospital too soon, just as psychotic as he’d been before he was hospitalized.) 

Later that night, our very sick son was dragged out of our home by 4 heavily armed officers … kicking, screaming and crying. He was removed like a criminal from the only home he knew, into the freezing rain, with only his guitar and a laptop hanging off his back! I sat for hours staring across the room, frozen in complete shock.

Even with the EPO in place, Joe refused to voluntarily go to a hospital or a homeless shelter. Joe immediately became homeless! Within days, his illness was much worse … he couldn't feed himself! He ended up seeking shelter with drug dealers, which led to more life-altering consequences. 

Six months later, desperate and defeated, Joe finally broke the DVO. During an angry rage, on a cold February morning, where I was too afraid to let Joe in, he threw a frozen yard ornament through a window in our front door. Joe's desperate cry for help occurred seconds after I had stepped away. A neighbor watched the entire event and called 911. Joe was quickly arrested. 

Now, years later due to his DVO record, Joe cannot find a job! Even if he could remain stable long enough for us to go to court to request for his DVO record expunged, the DVO records remain in national data banks forever. The current behavioral health system sets up the entire family to fail. These laws establish to protect the public and a person's civil rights, actually backfire on person with a serious brain disease, destroying their will, destroying relationships and destroying trust with law enforcement.

You cannot imagine the pain watching someone you love dismantled mentally and physically. It all began with not only Joe’s RIGHT TO SAY NO, but also the fact that Kentucky does not have transitional services governing adolescents with severe mental illness into the adult system. THIS IS WRONG!

If my son had diabetes and saw a doctor when he was twelve, would his medical treatment drastically change when he turned 18? In Kentucky, HIPPA mixed with civil liberties = deterioration.

At 22, Joe sits behind a computer in a small apartment communicating with the outside world in a way that no one would ever believe. He has become an angry, hostile and desperate young man.

Today was a mere example. Joe phoned a dozen times in a less than an hour. When I receive that many phones calls in a short time, I realize there is likely to be a crisis. I take a deep breath and dive in. The stress 'du jour' was that Joe had just had a visit from his community mental health provider. Apparently they had informed him that his SSI needed to be reevaluated. Since Joe was able to work quite a bit before he stopped taking his meds, he qualified for SSDI. Supplemental Disability Insurance, is similar to what a person receives after they retire. Neither of these checks are much, definitely not enough to live on. Yet, this small amount does help Joe to have his own apartment and to NOT live on the streets. In Joe’s mind his money was about to be stopped and he would indeed be homeless in the very near future. He brain was stuck in 'park mode.' In a panicked voice he screamed, “I cannot become homeless again! I would rather be dead.”

In Joe’s mission to reach me, he left voice mails and even text messages such as: 
“Homeless is for people that haven’t committed suicide yet. If I go homeless I’ll just go ahead and kill myself. You are a fucking bitch; you won’t even talk to your homeless son. I ought to kill you first before I kill myself. You are more of a virus to society than I am.”

Imagine receiving a text from your son or daughter from college like this? What would you do? Who would you call?

When I try to reason with Joe about taking his meds or taking control over the illness that is destroying his brain … I hear statements such as: “I do not need medications. They make me sleep and I am too busy to sleep. I have too much work to do”. Or … “I can’t go to college, I already know everything; what a waste of time that would be." Or ... “I can’t work for ____, I know more than everyone working there and they would all hate me” … and on it goes.

The only thing that will help Joe is long term Assisted Outpatient Treatment or AOT. Some will argue that psychotropic medications are also dangerous and can bring on horrible irreversible side effects. However, Joe will die young without help!

Bottom line, if Joe were under a doctor’s care and he was able to accept treatment, his future has hope. As it is now, we are all dying a slow death from the dysfunctional mental health system.


  1. We rather easily got one family member treatment in one state, probably because 1- The state actually had a law allowing us to easily get her into treatment, and 2-they could see a major physical (medical) problem, so it was easy to say she was endangering herself. Maybe it would not have been so easy if the problem were invisible, as many are.

    On the other hand, we could not get help for another family member in a state with laws (or should I say lack of laws) like in Kentucky.

    HOWEVER -- I feel that much of the treatment we do give people is not appropriate long-term, comprehensive medical care, and such substandard care is not right, either.

    Both my daughters had severe "mental" illness, much like "Joe." Yet over a decade of psych treatments later, we finally discovered that the psych meds were not the appropriate treatment for them. You can read more about that at

    So why would I still say that I am in favor of assisted treatment??... It is only in favor of it with a caveat -- that comprehensive medical testing be done as well. And that's another entire battle.

    I believe that the goal of assisted treatment should be to get a person to a point where they CAN cognitively be ABLE to engage in their own treatment (rather than just say "no" to ANY treatment).

    And the best, most humane way for children who have grown up with brain/cognitive problems. after turning 18, would be, as is said in this blog post, to have transitional care easing them from childhood into a more independent life. Say, if the years between 18 and 21 could be used as that transitional period.

    It is OUTRAGEOUS that instead, the whole system drops support and continuity and instead of getting a stable, healthy, contributing member of society, we get desperate, homeless young adults, and families living out a hellish nightmare.

    I recognize the entire issues is fraught with questions that would need to be ironed out. If a person does not have full adult rights at 18, does it go on some record? Would it create stigma? Would that be "expunged" when they became a fully functioning stable adult? Our society is so punitive and there is such stigma! It is no wonder that our children would be loathe to be labeled!

    Thank you so much for this blog, because this is a necessary discussion, and obviously, the system IS broken on multiple levels.

  2. My son is similar to Joe. I actually had to move to put distance between us. I get phone calls that are as damning as the email you got. They are very similar. And if "John" gets me alone, he does more than menace. He strikes me.

    Before he was 18, he got the care he needed and was a completely different person. I ache for that son.

    I don't know what can be done to change the laws. What do other states do? What do other countries do? It seems like Scandinavia with their great social systems might have some humane answers.

    I want John to participate in his treatment, but he denies having any problem and says it's me who is mentally ill. He hates his meds because they make him gain weight and somehow restrict his behavior, but he's was fine with them when he was on them.

    John is handsome and always has a girlfriend for a short time anyway. I think they split up after he begins hitting them. I'm afraid he'll eventually end up in jail. His rages are unbelievable to me.

    He seems to hate most people. You just don't know how loving and sensitive he was before he went off his meds. And yes, he did sleep much more, but he was able to hold down a job.

    He didn't use good judgement then, either, but he was very young still. He is 32 now and we just see each other once a year and I am never alone with him.

    Elizabeth M.